What Dementia means to me.
The word dementia conjures up the horrors of seeing a loved one deteriorate into a shell of a person sitting with a blank stare or acting as a mad person. None of us expect to travel this scary and frustrating road called dementia. Take a deep breath, get comfortable and search through Unlocking Dementia as you seek out the information to help provide the best quality of life for those living with dementia and their caregivers.
Simple paths and clicks through this site guide you to answers for your questions, help with emotions, link up with resources, and prepare for the future goals and activities. Unlocking Dementia is simply that – unlocking the complexities, language and psychological barriers using everyday terms and explanations.
Although familiar with dementia, as my grandmother had symptoms of dementia when I was a teenager, dementia became more personal as my mother-in-law, father, and finally my husband was diagnosed with various forms of dementia. The feelings of fear, guilt, anger and despair all raced through my family.
I was always encouraged to seek knowledge and learn something new every day. As I began to research dementia, I found an enormous wealth of information, but it was so concentrated and unfocused, and it was easy to become overwhelmed. I wanted to provide a better way for those living with dementia and their caregiver to learn about dementia.
Seminars conducted at local health organizations are either too general or too specific to be of immediate help. Terminology is often confusing because one definition can contradict another, or many different words defined the same thing. There are many books written about dementia that contain valuable information, but it expensive when purchasing books and only gain a small amount of useful information. Often questions arise through the lifetime of this disease and although the information may have been given earlier, it didn’t fit the exact need at the time, so the information was forgotten.
I wanted to provide a better way for those living with dementia and their caregiver to learn about dementia, and gain up-to-date information, knowledge and suggestions for survival in the ever-changing world of dementia.
After attending numerous seminars and workshops, and pouring through volumes of books on dementia, I felt family and independent caregivers do not always have access to seminars and research available for employees of dementia nursing homes and assisted living centers. In addition, being a family member caregiver has inherently more emotional considerations and issues than employees who can go home after their shift of intense caregiving.
Using the internet and social media, I wanted to develop a method to get the information to those needing it quickly and timely. Coupled with my experience as a systems programmer and data base developer and my return to school for a Masters in GeroPsychology, I began to develop Unlocking Dementia. I studied how age, lifestyle, emotions, disease. and environment impacted aging.
As part of my studies and research, I developed a model to present information about dementia and tips on how to create a better quality of life for those living with dementia and their caregivers. I also became a certified Positive Approach to Care (PAC) trainer to learn different approaches to day-to-day interaction with those living with dementia.
Unlocking Dementia is the result of years of research. It is a dynamic and virtual library of information, caregiving tips, answers to questions on immediate needs, and a list of available resources. Unlocking Dementia is a living source of information at the tips of the fingers. Caregivers and those living with dementia can enter a few keywords to receive quick and short general information that can branch out into more details when needed.
Emotionally, the caregiver is often in the middle of a situation and not thinking clearly. Having a virtual partner to ‘talk to” can help focus the caregiver and see the situation from a different perspective. It’s like having support of a co-worker when you are at loss or feel overwhelmed and are battling the internal and external emotional pull of the environment.
Dementia is often described as an umbrella where dementia is the covering, and the various types of dementia are the ribs of the umbrella. Unlocking Dementia is designed more like a tree. The trunk of the disease is dementia, the branches are the types of dementia, and the twigs are the interacting facets of each type. As research and medical advancements of dementia are discovered, this tree adds branches and twigs to continue the growth of information and unlock that interaction.
One type of dementia may have specific symptoms, but also exhibit symptoms common or similar to other types of dementia. This is often why dementia seems so complex. Unlocking dementia will help travel through this maze of information, identifying symptoms and offering solutions based upon immediate needs or as a guide to the future.
The purpose of Unlocking Dementia is to provide dementia caregivers and those living with dementia easy access to information, resources, emotional support, advice. There is an interactive area to ask questions and receive solutions from other caregivers using current virtual media. Through newsletters, blogs and chat rooms, the site is regularly updated as new information is obtained. Subscribing to Unlocking Dementia will ensure up-to-date notifications of the more recent change to the database.
Unlocking Dementia accepts articles from industry professionals and those who have been caregivers. Often a different point of view fosters new ideas and increases the value of Unlocking Dementia to more caregivers and those living with dementia.
It is the intent for Unlocking Dementia to be an invaluable tool in the developing toolkit of those who are impacted by dementia every day. The more information we share with others, the more we can begin to unlock all the mysteries of this disease. Dementia has been impacting our families since recorded history and we are now just weaving our way through all the intricacies of the human brain. Unlocking Dementia is an important part of that journey.